I've not slept well for a couple of days since the big cough, vomit, cough, vomit, thing on Tuesday. Where I've gotten most of my sleep has been during the day at an hour or two at a hitch, just doing that all day long. I slept a lot yesterday during the day, but had fallen asleep about 2215 give or take. Then, around 0100 or so I woke up. My shirt was damp and making me chilly. Couldn't for the life of me figure out why. I checked my Feeding tube and the two places to feed were capped. But the one that you use to inflate the balloon that keeps the Feeding Tube in looked weird. There's a reason it looked weird, part of it was missing. How strange. I checked and sure enough there were the two pieces that make up that particular end lying on my lap. I got those back where they belong, but that didn't explain the shirt. Then WHAMO! It dawns on me that if that part was completely out, then the balloon had to have deflated. Uh oh. Yes, I looked. Yes, the Feeding Tube had come far enough out that I could see part of the balloon sticking out of my stomach stoma. Uh oh. No sweat, I've got a place that's marked on how far in it should go. There's a round piece over the line that keeps it from going too far in, that's my marker. So I gently shove the line back in (okay not so gently, more like "Shove that fucker in before it pops out and you have to take your ass to the ER to get it put back"). Sweet. Uh oh, how do I re-inflate the tube? I remember I've got that tiny syringe for measuring the amount of Evil Steroid liquid. I grab that, hold it as tight as I can against the "Balloon" marked tube and push. It's working! Took a couple more times before I got resistance on the syringe, which I figure means the balloon is as full as it needs to be, and I'd better stop before I pop it. Talk about a royal pooch screw that would be if I blew the balloon up. For now, this tops my "What The Fuck Could Possibly Be Next?" list. I mean, really. Now that it's back together, I can't even pull the damn end marked "Balloon" pieces apart, let alone figure out how they came out to begin with. Perhaps I've got a Poltergeist messing with me.
I've had some questions from some folks that haven't been around since the beginning, so I'm going to take the time to kind of fill in some blanks for them, if you old timers will allow me the time to do so. For starters, I can taste some things not because I can swallow anything, but because my esophageal sphincter (the muscle that closes your esophagus between mouth and stomach) only works at about 85% efficient. It never completely closes. If I push really fast while I'm getting a drink, or if I'm putting soup, coffee, or even my feed, too fast, it will back up my esophagus and get onto the back of my tongue enough I can taste. Sometimes that's nice, other times it's a royal pain in the ass because my food tastes worse than it smells. It smells like a decaying raccoon. That's why I can taste somethings, and why it makes me vomit sometimes when I cough. The mucus I produce gets hung up between esophagus and mouth, and be coughing it triggers my gag reflex and I vomit. Yes, it's more fun that having an eye dug out with a rusty spoon, but only by a little.
Some of the other things that are trouble some is not having a soft palate any more. That's the small muscle and skin that covers your nasal passages from your mouth. It helps make the pressure differential that allows you to swallow more easily. It also keeps anything from getting into your sinus if you vomit. By not having that, every time I vomit I have my sinuses filled as well. And yes, that too is almost as much fun as having an eye dug out with a rusty spoon. And once again, just barely as much fun. Along with that is not having a base of tongue any longer. That's the muscle that moves your tongue forward and backward and really aids in swallowing. It gives whatever you're eating or drinking a big shove down your esophagus to get a strong swallow started. If not for all the surgery this time, combined with the radiation from treatment five years ago, I may have been able to swallow. In fact, I had started swallowing a little just ahead of July 7 of this year when I went in for reconstructive surgery. The first of what I hoped would be several that would also get me fixed so that I could swallow. It was also the time they found my cancer again. Damn stuff just couldn't stand leaving me alone. This time there's nothing more the docs could do and I became terminal.
Along with soft tissue removed, I had part of my left jaw taken out, and to reconstruct the bone and muscle taken, they used part of my right quad. That died and in turn gave me a lovely bacterial infection. They took that out (second surgery) and put my left pec in it's place. Then later they had to go in and surgically clean and washout my infected areas (third surgery. That put me around 28 hours in surgery, including dying for a short time on the table for the third surgery. I believe I have been under the knife for approximately 30 hours total. That's a long time to be knocked out, for sure. Although, there are people who have to undergo many more surgeries than I had, and are under the knife for a lot more hours as well. My hat's off to those folks. They are real troopers. By the time I got out of the last one, and found out they couldn't and wouldn't do any more reconstructive surgery, I was damn tired of being poked, pushed and prodded. Counting the week prior to surgery, I'd spent nearly 30 days in Houston, and 22 days of that in a hospital bed. Went in January 22 for my first surgery, left February 12th to come home for a week before having to go right back for further check ups. I got to Houston and MD Anderson on January 13, a Sunday, to get all my blood work and a weeks worth of meetings and tests run before surgery. My Houston friends, nothing personal, but I'm telling ya I never want to see Houston again, ever. I've not had the best of times when I was there.
I was waxing a little nostalgic the other day, and remembering back how much things have changed since I was a young un. We got two and a half channels on the TV when I was a kid. The first one I remember was a huge Zenith on a metal stand. Black and white, of course. I can still tell you what furniture and where it was sitting in the living room on the day Kennedy was shot and killed in Dallas. I'd not been three very long, but I can still see that clear as day in my memory. I told my mom, she didn't believe me, and seeing her come into the living room and seeing her sit on the couch and cry. She liked Kennedy, even though she and dad were big in the Republican party in Russell County Kansas at the time. I remember watching "How The Grinch Stole Christmas", "Rudolph The Red Nosed Reindeer", "Charlie Brown Christmas", and a lot of other shows along those lines in Black and White on the two and a half channels. Big time stuff when I was a kid were any musical that was on the boob tube, Ed Sullivan, The Smothers Brothers, Laugh In, as well as all the celebrity variety shows. Carol Burnett was a must see thing when I was a kid.
Some time around the time I was six or seven, the old man got us a 25" console color TV. Man, that was shittin in tall cotton, I'll tell ya. And yet, only about 50% of the shows were in color then. I remember seeing Bonanza, Gunsmoke, Wild Wild West, and several other shows going from black and white to "Living Color" as I got older. The console was also top of the line in that it had a remote control that turned the knob, instead of a kid or parent having to get up and walk across the room to change channels. It clunked when you changed channels. It had to, there were not digital numbers, so you either went up or down the available numbers, 2 thru 13, then a few UHF channels. Crazy shit.
In around 1972 or 73, when we lived in Great Bend Kansas, we got cable TV for the first time. Every channel had something on it. Twelve different channels, twelve different stations. Some repeated NBC, ABC and CBS, but there were channels out of Kansas City. KBMA was the big one. That was uptown baby. Jonny Sato and Giant Robot, Speed Racer, reruns of Gilligan's Island, and on Sunday, Tarzan Theater. It's also where I got into watching The Midnight Special hosted by Wolfman Jack. Great rock bands playing live on the show. Sometimes two to four different bands, all playing two or three songs each. If I'm not mistaken, David Bowie had what would be the first music video on there as well. Done to "Fame". Pretty cool shit.
I got my first shot of Monty Python's Flying Circus as well. Good lord what funny shit that was then, and still is. Shows were on in the 1970's that I don't think would ever see light of day anymore. They'd be far too honest for the Politically Correct crowd, and the producers and actors would be cast out as demons for even thinking of showing them. Shows like "All In The Family". Archie Bunker, America's favorite bigot. That show even dealt with his wife Edith being raped. You'd never see that now. It was an honest look at it as well. Edith was too embarrassed and ashamed to even call the police or tell Archie, and in the end, she did both. Pretty damn insightful for it's day and age. "Maude" was ahead of it's time as well. Although my parents didn't like that one. "Sanford and Son" with Redd Foxx. Funny shit. It's a shame we've gotten so politically correct that we can't even put shows like those that ran in the mid 1970's on the air forty years later, for fear someone will be offended. Quite frankly, I think those programs did more for opening up the public's eyes to what really went on in the American Society and closed some gaping holes in our beliefs. It seems to me, even with Watergate, the Iranians taking American hostages, that we were a lot less divided and more honest with each other than we are at this point in time. At least we admitted that there were bigots in all races, and pointed out how damn stupid they cam off. It's a shame we can't seem to be that honest with ourselves as a nation, all because it's not Politically Correct to point out that all races and creeds have their fair share of bigotry and racism. Perhaps one day we can get back to the point we were in the 70's, when race mattered a little less, and character mattered a whole lot more.
I'm sure my opinion will stir up some of my more liberal friends, and maybe some of my more conservative friends as well. That's too bad, because in doing so they'll have proved my point for me. I appreciate that.
Book of Rock: Get Comfortable in Your Own Skin First, before you start to tell me how I should behave, dress, or present myself. You can't enjoy other people as just people if you can't first enjoy your own company, and can laugh at your own silly shit. Do that, and the world becomes your playground, not something you have to put up with so you can grumble about how fucking unfair people are to you. Get used to it, it's not fair anywhere at any time. It's just life. Learn to enjoy it
Hugs, kisses, and cheap feels for the ladies. Hearty handshakes and BroHugs for the guys. Now, got out and Carpe Jugulum!
Thursday, December 5, 2013
Wednesday, December 4, 2013
Yeah Yeah, It's Late In The Morning
Yeah, yeah, I fiddled around and didn't get the blog done early like I generally like to do. I didn't slept at all until this morning, though. After I got the Boy off to school. I had a coughing spell yesterday that turned into a vomiting event, that turned into an "I'm not going to eat anymore today, because my stomach is still too jumpy" event. Hospice came by while I was in the shower. Everyone assumes that the problem is nausea, making no mind that I've told them dozens of times it's not nausea, it's from my inability to swallow my own secretions, and having that make me gag or cough enough until I vomit. It's oh so fun!!! Geez. So he starts in with three different anti nausea drugs I can take so I won't throw up anymore. Even after I write it down twice that it's not nausea, it's gag reflex that's making me vomit. Twice. He finally soaked it all in and said "oh! you're not nauseous then?" No, no, I'm not. From vomiting, though, my stomach is too jumpy to feed again. So I'm taking Mucinex. We'll see. Last time all it did was make it easier to hack up out of my trach. Didn't do much for reducing the amount of mucus I'm producing. Which to me seems like it should be the objective. So I'll see how it goes. So far today it's going pretty well. One coughing spell about 0500 overnight isn't too bad at all. Speak of the devil, I just had one of those coughing spells. This one, however. had a lucky finish. It wasn't bad enough to make me hurl. I didn't sleep last night, I let that bother me. Waking up coughing, then puking didn't seem like all good an idea to me. So I'll nap more today. No biggy.
It's a pain in the ass to have that happen. It never does when I've got people around to help, except that time about 3 or 4 weeks ago when the Boy was home with. He was a lot of help in getting me towels to catch every thing, and clean up my mess. He didn't panic, and there are times when that's going on I'd love to panic. Yesterday I had time between the initial start until the next wave of heaves to hit the bathroom on my own. That is unusual in itself, but not unwelcome. I wish I had time to get there before they start, only I don't get warnings like you do if you're all in one piece and about to vomit. I could always feel it start when before I lost my ability to swallow. Now I never know and that is a bit spooky. Coughing hard then WHAMO! along comes the barfing. I don't even really gag all that much before, and nothing out of the ordinary with those that happened yesterday. Same old routine of getting a coughing spell, then suction, then cough, then puke before I could start suction. But it went one for what seemed like a long time. It even stopped for a while then kicked back in right before I stepped into the shower. That one was probably the most bothersome. Looking back, it was better than being finished with my shower than having to take another shower all together?
Today is "intake more fluids" start off. I will be taking a lit more slow today and see if I'm over the vomiting spell. Ive had a couple small coughing spells, but nothing like yesterday's. I of good hopes that I won't repeat that again. Although I can taste the icky stuff in the back of my throat again. This is not boding well to keep my vomiting to zero, but once again, if I'm quiet things should slip back into normal again. Well, as close to normal as they ever get around me these days. I would say normal would be a grand start! Anyway, taking in more fluids may help quite a bit. Never hurts to be over hydrate but being dehydrated is a bad thing. Of course all this is predicated upon my getting my ass of here and going to the kitchen and getting started. So, let's get that done and get to feeling more like my old self.
Book Of Rock: Most of what happens is of your own making. Don't try and lay it off on someone else or just bad luck. It's all about choices.
Have fun today, kids
It's a pain in the ass to have that happen. It never does when I've got people around to help, except that time about 3 or 4 weeks ago when the Boy was home with. He was a lot of help in getting me towels to catch every thing, and clean up my mess. He didn't panic, and there are times when that's going on I'd love to panic. Yesterday I had time between the initial start until the next wave of heaves to hit the bathroom on my own. That is unusual in itself, but not unwelcome. I wish I had time to get there before they start, only I don't get warnings like you do if you're all in one piece and about to vomit. I could always feel it start when before I lost my ability to swallow. Now I never know and that is a bit spooky. Coughing hard then WHAMO! along comes the barfing. I don't even really gag all that much before, and nothing out of the ordinary with those that happened yesterday. Same old routine of getting a coughing spell, then suction, then cough, then puke before I could start suction. But it went one for what seemed like a long time. It even stopped for a while then kicked back in right before I stepped into the shower. That one was probably the most bothersome. Looking back, it was better than being finished with my shower than having to take another shower all together?
Today is "intake more fluids" start off. I will be taking a lit more slow today and see if I'm over the vomiting spell. Ive had a couple small coughing spells, but nothing like yesterday's. I of good hopes that I won't repeat that again. Although I can taste the icky stuff in the back of my throat again. This is not boding well to keep my vomiting to zero, but once again, if I'm quiet things should slip back into normal again. Well, as close to normal as they ever get around me these days. I would say normal would be a grand start! Anyway, taking in more fluids may help quite a bit. Never hurts to be over hydrate but being dehydrated is a bad thing. Of course all this is predicated upon my getting my ass of here and going to the kitchen and getting started. So, let's get that done and get to feeling more like my old self.
Book Of Rock: Most of what happens is of your own making. Don't try and lay it off on someone else or just bad luck. It's all about choices.
Have fun today, kids
Monday, December 2, 2013
Thanksgiving And Beyond
It was a good Thanksgiving, all the kids were here, they ate well. We talked a little, I slept a lot. I'm an old party pooper. I've also come to the conclusion that I'm happy I'm fixed, because there is no way in hell I can keep up with a two year old. Poor little dude had sore legs and stuff from growing pains. Yes, I remember those as well. not any fun for kid or parent. YaYa is what we call grandma. I said "Wyatt, that's my YaYa" he said , "No, that Wyatt's YaYa". He did the same thing with his mom. Only with his mom he pointed and me and said "WYATT'S MOMMY". I got the picture. Bowen played with everyone a little. He's here all the time, so I don't know if he felt left out or not. I hope he didn't. Wyatt ran him crazy following him around. I can't be mad about that, because I remember some family doing the same thing to me. All in all it was nice to spend time with all the family. I'm hoping we can all get together again before I croak.
The best part of that was I had three full days that were above average. I've got some nerve thing in my neck, that when I get a lot of swelling, pinches down some and makes me right arm painful enough my eyes want to leak. Yesterday, a time or two, it was an 11 on a scale of 1-10. I'll let you in on a little secret as well. It makes it a real challenge to type in the blog, or on FB for that matter. Although I surfed FB a lot yesterday, but not much. One thing I do have that helps a little, I've been sleeping more both during the day and at night. That's a good thing, I believe. I do know that I wake up without so much pain, but that's sort of fleeting. Fleeting or no, it's nice to site and listen without the right arm feel like it's going to fall off if someone pulls a cotter pin.
I really do enjoy just sitting and listening to the family chatter. It's kind of nice not to be blabbing along with the rest. Don't get me wrong, I'd really rather be able to speak and to eat just a little bit to not being able to do either one, but listening has it's advantages as well. I am certainly glad that I got the steroids washed out of my system before they got here. It would have been absolutely no fun to have an anger issue over the Thanksgiving Weekend. NOT
Beside the really sore and swollen neck I had bleeding going on from Wednesday night until Sunday morning, and just a little bleeding yesterday and this morning. It's a bit unnerving to wake up, take a shower, and wipe your face to find blood on the towel from your mouth and chin. That was Thursday, and I really wondered about contacting hospice for a few hours. But it is all part of what's going on with me. Even the Doctor said "well, you'll have bleeding that will worsen over time. The pain may or may not increase, but that is controllable." I think there are a lot of things that they doctors aren't sure about that will either be worse or not nearly as bad as they predicted. Boy, if that's the case I need to come back from the dead and haunt them for just a while. The one thing the bleeding accomplishes for Baxter is keeping me loaded down in one spot. It's a pain to load up and go anyplace with the damn portable suction pot. I do it, but it's not sexy nor is it easy for me to crank that puppy in public, especially a restaurant. It's noisy and gross. So, rather than get up every minute or so to hit the head to suction my mouth out. It's a pain in the ass, but I do it so I can be with the family. After the steroid incident I need to spend as much time as possible with them and have fun doing so. Generally we do have fun, but it can be a struggle for me if I'm spending a good amount of time hanging out in The Head. It's something that if I can bulldoze over, I can go around, or just ignore and suction when I need to do so. Naaaawww, I'll get up and go the restroom to suction. I've got this thing about upsetting people for no too tea-e
The bleeding is a pain in the ass, but the swelling is something that I have to try and fix, even for a few days. It is more than just swelling, it makes my entire face and neck hurt if I let it go for too long. There will come a time, I'm sure, when that just won't be any good any longer. But for now, it does a great amount of good and I get more quality of life than just quantity. It helps my neck and face even away from the swelling. I've have very little around my ride side of my face, and today the swelling on my left jaw line is pulling the right side of my jaw toward it, and is causing some real ouch moments. Such as right now, I can move my head a bit and make the right side of my jaw feel like someone is stabbing it with a knife. Oh my! Then fun I'm having with the cancer shit!
All the playing catch up is finished. Possibly since I don't feel well today has saved you all from an incredible rant. Lucky you
So, today's marching orders. There are only 23 days until Christmas. Don't let yourselves become one of those morons that fight over some dumb assed sale. Try and remember how peaceful the guy we who's birthday we celebrate preached and not to be so taken with the material things people seem to think make the holiday.
Have fun and keep your mind in the middle
The best part of that was I had three full days that were above average. I've got some nerve thing in my neck, that when I get a lot of swelling, pinches down some and makes me right arm painful enough my eyes want to leak. Yesterday, a time or two, it was an 11 on a scale of 1-10. I'll let you in on a little secret as well. It makes it a real challenge to type in the blog, or on FB for that matter. Although I surfed FB a lot yesterday, but not much. One thing I do have that helps a little, I've been sleeping more both during the day and at night. That's a good thing, I believe. I do know that I wake up without so much pain, but that's sort of fleeting. Fleeting or no, it's nice to site and listen without the right arm feel like it's going to fall off if someone pulls a cotter pin.
I really do enjoy just sitting and listening to the family chatter. It's kind of nice not to be blabbing along with the rest. Don't get me wrong, I'd really rather be able to speak and to eat just a little bit to not being able to do either one, but listening has it's advantages as well. I am certainly glad that I got the steroids washed out of my system before they got here. It would have been absolutely no fun to have an anger issue over the Thanksgiving Weekend. NOT
Beside the really sore and swollen neck I had bleeding going on from Wednesday night until Sunday morning, and just a little bleeding yesterday and this morning. It's a bit unnerving to wake up, take a shower, and wipe your face to find blood on the towel from your mouth and chin. That was Thursday, and I really wondered about contacting hospice for a few hours. But it is all part of what's going on with me. Even the Doctor said "well, you'll have bleeding that will worsen over time. The pain may or may not increase, but that is controllable." I think there are a lot of things that they doctors aren't sure about that will either be worse or not nearly as bad as they predicted. Boy, if that's the case I need to come back from the dead and haunt them for just a while. The one thing the bleeding accomplishes for Baxter is keeping me loaded down in one spot. It's a pain to load up and go anyplace with the damn portable suction pot. I do it, but it's not sexy nor is it easy for me to crank that puppy in public, especially a restaurant. It's noisy and gross. So, rather than get up every minute or so to hit the head to suction my mouth out. It's a pain in the ass, but I do it so I can be with the family. After the steroid incident I need to spend as much time as possible with them and have fun doing so. Generally we do have fun, but it can be a struggle for me if I'm spending a good amount of time hanging out in The Head. It's something that if I can bulldoze over, I can go around, or just ignore and suction when I need to do so. Naaaawww, I'll get up and go the restroom to suction. I've got this thing about upsetting people for no too tea-e
The bleeding is a pain in the ass, but the swelling is something that I have to try and fix, even for a few days. It is more than just swelling, it makes my entire face and neck hurt if I let it go for too long. There will come a time, I'm sure, when that just won't be any good any longer. But for now, it does a great amount of good and I get more quality of life than just quantity. It helps my neck and face even away from the swelling. I've have very little around my ride side of my face, and today the swelling on my left jaw line is pulling the right side of my jaw toward it, and is causing some real ouch moments. Such as right now, I can move my head a bit and make the right side of my jaw feel like someone is stabbing it with a knife. Oh my! Then fun I'm having with the cancer shit!
All the playing catch up is finished. Possibly since I don't feel well today has saved you all from an incredible rant. Lucky you
So, today's marching orders. There are only 23 days until Christmas. Don't let yourselves become one of those morons that fight over some dumb assed sale. Try and remember how peaceful the guy we who's birthday we celebrate preached and not to be so taken with the material things people seem to think make the holiday.
Have fun and keep your mind in the middle
Friday, November 29, 2013
Meanwhile, Back at The Ranch
There are people spread out in my living room, taking up all my couch. Tonight I'm hoping they'll take over my bedroom, since Liz has to work from 2300-0500 tonight. Having the son, his squeeze, and the youngster Wyatt here is a pure joy. I don't get to see them often enough. As with Sarah, they are (especially now) just out of reach of travel. Sarah and Bo moved in with Liz, me, Dec, and Addie in late August. I do love having them here. But I don't get to see enough of Chance and his family, and they are sleeping in the not so comfortable living room on the couch. They are troopers, that's for sure.
Wyatt is two, and he acts like he's two. Now it's a riot, when I had two year olds of my own, it wasn't nearly so damned funny. He's just being a two year old boy, and sometimes it's hard for Ma and Pa to get the laughs out of him like I do. Sure, sometimes he misbehaves, all kids to that. And yes, sometimes he can be a little frustrating, but all in all he's fun. Just like Bowen is fun. Both of them were wired for sound yesterday, and I'm positive they wore out moms and dads. I sat back and laughed, because everything that was said to the boys to get them to calm down, sounded vaguely familiar. Oh yeah!! Because Liz and I had said the same thing to our two year olds. We've not had a two year old in the house since 2000, the year Dec turned two. So it's been fun.
I've had issues with a couple of things. One of them is this just dropping off in the middle of things. Even, if like last night, I sleep 4-5 hours straight through. I only woke up twice. Once before 2300, then not again until 0320. That's time for a shower, get drugs and food in, set a spell, then head to SBucks around 0500. Accomplished that part of my day quite well, thank you. So, I'm sitting in SBucks pumping my coffee down the feeding tube, reading the paper, when I drop off. Only for five or six minutes, but geez man, talk about looking like an old fart, catching a nap while having coffee. Good gosh. When I do that at home, it's for fifteen minutes to an hour. That still annoys me, but I guess I'm gonna have to get used to it. With all the napping during the day, and several hours straight at night, I feel like I'm sleeping more than I'm awake.
The other thing is some pain, mixed in with a majorly stiff and swollen neck. Lymphedema helps that a lot, but it seems like it's coming back faster than before. Such as this morning I thought I was going to have to get a hammer and pound my trach back in after my shower. While I shower, it seems like my sinus love to drain like Niagra Falls. That piles up mucus in the back of my throat that I can't suction until I get the trach in so I can force air up through it to suction most of it out. Other wise it feels like I'm choking, because it won't let air past the mucus plug. Liz was trying to give me a hand, and I couldn't explain to her why I needed to get the trach in first. That's frustrating for me and I'm positive it is for her as well. I'm going to keep my note book handy from now on, so I can write out what's going on before hand. We generally communicate pretty well, except when I've got the trach out. Then all I can make out is "phhhhhhhhhttttttt" the sound of air going out the tracheotomy hole rather than across my larynx. And it's too weird to stick my pinky into the hole long enough to say "I ha oo g is in erst". See why it's frustrating for both of us?
Yesterday I had issues with what I just finished typing, as well as more pain than today. I've got a nerve thing that makes my right arm hurt from the middle of my upper arm, down into my forearm. Bad enough that it damn near shuts down my ability to function even half right. It's something in my neck, trap, and rear delt. All of that is somehow nailing the nerve down and makes it crater the use of my right arm. I can deal with a lot of cramp, pain, tendonitis thing, but this makes my eyes water. It's something I'll get sorted out, and work around it, if I can't go "Hi diddle diddle, straight up the middle" with it, I might slow or stop it going around it. We'll see.
I took a long time to let my siblings know that I wish them a Happy Thanksgiving. That's terrible on my part. I said, and it's true, that I had some issues I had to take care of first. That was true, but that's still an excuse, and everyone knows about excuses, correct? Shame on me. I should have just toughed it out and sent them a text message right off the bat instead of putting it off. So yes, shame on me.
I'm noticing my face, neck, left shoulder, and clear down the left side of my body is holding a lot of fluid. That adds to the pain quotient, because it limits my movement without needing some excessive help getting the arm up and around for my. I'm trying to stretch more to keep the muscles and tendons limber, but at times that's where it feels like the fluid is hiding out. The PT and I will get it sorted out and maybe she'll give me a hint on where to rub and how. That way I can relay it to Liz and we can get after that stuff is settling in, and get it moving again instead of piling up. It also causes some pain in my neck (insert wise assed remark here) and face. The collection of fluid, or it's a coincidence, that makes my face swell and muscle cramp. When the left side of my face starts to cramp, it pulls the right side of my face in toward it, and makes my right jaw pop. When it tries to dislocate my right jaw, I almost cry. Damn sure makes my eyes both water. I'm not so sure that it's not worse than running a cheese grater up and down the back of one thigh, but it's close
And yes, my Thanksgiving was wonderful. So many people wished me so on FB that I am a bit overwhelmed with all the postings. I hear that I inspire folks, and that they are learning things about living through what I post. I get so much more than that from my friends and family, I get a big dose of humility. Some days I feel like I'm letting myself, my family and my friends down when I get bitchy and whiny. The both are consumers of time, and that's something I'll never have enough of any longer. If I can help one person, my friend Shannon for example, not be afraid to go get the check up they've been putting off, then that's all the thanks I really need. That's the one thing I was really trying to get across with making the blog. So we could all go through this together, face our fears as a group, and get done what we all need to do so we can grow older. I'm stuck, I won't get much older, but all of you who read this, I hope you can. For the record, no, I'm not afraid. I've already died on the operating table once, this time should be a cake walk. I have DNR orders, mostly so some doctor or paramedic doesn't bounce up and down on my chest again. That one time in MD Anderson left some bruises. And made me very sore. I'll pass on that this next time, thank you.
I'm giving up guessing how long I've got left. Tuesday I'd have sworn today would be it. Make Thanksgiving with the kids, then check out. Today, though, I feel pretty darn spry. And even if that only lasts a little while, I'll take it. So now, when people ask, How Long?, I can say with confidence, any time between right now and 8 months from now. I still make the best out of every day I'm around to pester folks.
Book of Rock: For God's sake it's Thanksgiving, why go out shopping and have near fist fights over shit you could buy tomorrow? Fights, arrests, and plain rude behavior certainly isn't within the Christian faith or practices. It's a shame adults act like that, then wonder why the young people act like ass hats. Maybe take a look at how you behave on Black Friday.
Happy Thanksgiving!!! Be careful out there, the nuts are out of the asylum
Wyatt is two, and he acts like he's two. Now it's a riot, when I had two year olds of my own, it wasn't nearly so damned funny. He's just being a two year old boy, and sometimes it's hard for Ma and Pa to get the laughs out of him like I do. Sure, sometimes he misbehaves, all kids to that. And yes, sometimes he can be a little frustrating, but all in all he's fun. Just like Bowen is fun. Both of them were wired for sound yesterday, and I'm positive they wore out moms and dads. I sat back and laughed, because everything that was said to the boys to get them to calm down, sounded vaguely familiar. Oh yeah!! Because Liz and I had said the same thing to our two year olds. We've not had a two year old in the house since 2000, the year Dec turned two. So it's been fun.
I've had issues with a couple of things. One of them is this just dropping off in the middle of things. Even, if like last night, I sleep 4-5 hours straight through. I only woke up twice. Once before 2300, then not again until 0320. That's time for a shower, get drugs and food in, set a spell, then head to SBucks around 0500. Accomplished that part of my day quite well, thank you. So, I'm sitting in SBucks pumping my coffee down the feeding tube, reading the paper, when I drop off. Only for five or six minutes, but geez man, talk about looking like an old fart, catching a nap while having coffee. Good gosh. When I do that at home, it's for fifteen minutes to an hour. That still annoys me, but I guess I'm gonna have to get used to it. With all the napping during the day, and several hours straight at night, I feel like I'm sleeping more than I'm awake.
The other thing is some pain, mixed in with a majorly stiff and swollen neck. Lymphedema helps that a lot, but it seems like it's coming back faster than before. Such as this morning I thought I was going to have to get a hammer and pound my trach back in after my shower. While I shower, it seems like my sinus love to drain like Niagra Falls. That piles up mucus in the back of my throat that I can't suction until I get the trach in so I can force air up through it to suction most of it out. Other wise it feels like I'm choking, because it won't let air past the mucus plug. Liz was trying to give me a hand, and I couldn't explain to her why I needed to get the trach in first. That's frustrating for me and I'm positive it is for her as well. I'm going to keep my note book handy from now on, so I can write out what's going on before hand. We generally communicate pretty well, except when I've got the trach out. Then all I can make out is "phhhhhhhhhttttttt" the sound of air going out the tracheotomy hole rather than across my larynx. And it's too weird to stick my pinky into the hole long enough to say "I ha oo g is in erst". See why it's frustrating for both of us?
Yesterday I had issues with what I just finished typing, as well as more pain than today. I've got a nerve thing that makes my right arm hurt from the middle of my upper arm, down into my forearm. Bad enough that it damn near shuts down my ability to function even half right. It's something in my neck, trap, and rear delt. All of that is somehow nailing the nerve down and makes it crater the use of my right arm. I can deal with a lot of cramp, pain, tendonitis thing, but this makes my eyes water. It's something I'll get sorted out, and work around it, if I can't go "Hi diddle diddle, straight up the middle" with it, I might slow or stop it going around it. We'll see.
I took a long time to let my siblings know that I wish them a Happy Thanksgiving. That's terrible on my part. I said, and it's true, that I had some issues I had to take care of first. That was true, but that's still an excuse, and everyone knows about excuses, correct? Shame on me. I should have just toughed it out and sent them a text message right off the bat instead of putting it off. So yes, shame on me.
I'm noticing my face, neck, left shoulder, and clear down the left side of my body is holding a lot of fluid. That adds to the pain quotient, because it limits my movement without needing some excessive help getting the arm up and around for my. I'm trying to stretch more to keep the muscles and tendons limber, but at times that's where it feels like the fluid is hiding out. The PT and I will get it sorted out and maybe she'll give me a hint on where to rub and how. That way I can relay it to Liz and we can get after that stuff is settling in, and get it moving again instead of piling up. It also causes some pain in my neck (insert wise assed remark here) and face. The collection of fluid, or it's a coincidence, that makes my face swell and muscle cramp. When the left side of my face starts to cramp, it pulls the right side of my face in toward it, and makes my right jaw pop. When it tries to dislocate my right jaw, I almost cry. Damn sure makes my eyes both water. I'm not so sure that it's not worse than running a cheese grater up and down the back of one thigh, but it's close
And yes, my Thanksgiving was wonderful. So many people wished me so on FB that I am a bit overwhelmed with all the postings. I hear that I inspire folks, and that they are learning things about living through what I post. I get so much more than that from my friends and family, I get a big dose of humility. Some days I feel like I'm letting myself, my family and my friends down when I get bitchy and whiny. The both are consumers of time, and that's something I'll never have enough of any longer. If I can help one person, my friend Shannon for example, not be afraid to go get the check up they've been putting off, then that's all the thanks I really need. That's the one thing I was really trying to get across with making the blog. So we could all go through this together, face our fears as a group, and get done what we all need to do so we can grow older. I'm stuck, I won't get much older, but all of you who read this, I hope you can. For the record, no, I'm not afraid. I've already died on the operating table once, this time should be a cake walk. I have DNR orders, mostly so some doctor or paramedic doesn't bounce up and down on my chest again. That one time in MD Anderson left some bruises. And made me very sore. I'll pass on that this next time, thank you.
I'm giving up guessing how long I've got left. Tuesday I'd have sworn today would be it. Make Thanksgiving with the kids, then check out. Today, though, I feel pretty darn spry. And even if that only lasts a little while, I'll take it. So now, when people ask, How Long?, I can say with confidence, any time between right now and 8 months from now. I still make the best out of every day I'm around to pester folks.
Book of Rock: For God's sake it's Thanksgiving, why go out shopping and have near fist fights over shit you could buy tomorrow? Fights, arrests, and plain rude behavior certainly isn't within the Christian faith or practices. It's a shame adults act like that, then wonder why the young people act like ass hats. Maybe take a look at how you behave on Black Friday.
Happy Thanksgiving!!! Be careful out there, the nuts are out of the asylum
Thursday, November 28, 2013
And a Truly Happy Thanksgiving
As we all know, this blog is about how my cancer is moving from Terminal Velocity to Critical Mass, and how that affects me. Yes, it's all about me. Once, and sometimes twice, a day I post up how I'm feeling, how the cancer is fooling with me, and how I have such great support from family and friends. After all, I realize I can't do this alone, (although, this burns my ass) and how important my friends are to me and therefor to my family as well
So, this will be pithy today. Nothing fancy and I'm thrilled I didn't croak off 3 days ago. Talk about throwing a wrench in the Happy Days gearbox. I'm thankful for that, there's no question about that.
What is it that makes me thankful? I don't know where to start, and what I put down isn't in any order what so ever, it is what it is:
Cancer: Why the hell would anyone be thankful for cancer? It's gonna kill me this time, for Pete Sake
I am because it's shown me loyalty and friendship. So much so that I'm humbled by the action
and attitude of my friends. It's making my family stronger for each other, mentally and
physically. As bad as it is, it is a character building event
Family: They are much tougher than I am, and when I got shitty while on the steroids, they put up with
some of that, but not all. Liz taught me a lesson in running off at the head. It nearly killed me
when I couldn't control my anger and it spilled off into them. I am learning to be careful
with my feelings, so I don't hurt others
Friends: Next to family the most important thing I've got going with me on this SNAFU run. They
help keep me honest. They are good folk all the way around. I started the blog for family
and friends. So that if one of them gets to ride this rocket, they are doing it blind. And
to maybe give some insight into what it's doing to one person, not just MD Anderson
or any other cancer centers idea of what's going on with one person, and hopefully
if they are in this position, they won't be so afraid.
Breathing: Yeah, I'm thankful I can still draw a breath. There are some days I feel like I'm ready for it
all to end, later on, I'm glad I was too stubborn to quit
The list can go on and on just like these few I've done here seem to wax and wane like tides. It's been a real party so far. It's a damn shame it's going to end sooner than I want it to end. Another thirty or forty years seems like a number I'd rather have.
Have fun today. Hug the family extra tight, Talk with as many friends as you can, eat a ton of food, then sack out on the couch watching football. But mostly, take time to be thankful for all the little things we sometimes overlook
For those of you traveling this morning, Fair Winds and Following Seas
So, this will be pithy today. Nothing fancy and I'm thrilled I didn't croak off 3 days ago. Talk about throwing a wrench in the Happy Days gearbox. I'm thankful for that, there's no question about that.
What is it that makes me thankful? I don't know where to start, and what I put down isn't in any order what so ever, it is what it is:
Cancer: Why the hell would anyone be thankful for cancer? It's gonna kill me this time, for Pete Sake
I am because it's shown me loyalty and friendship. So much so that I'm humbled by the action
and attitude of my friends. It's making my family stronger for each other, mentally and
physically. As bad as it is, it is a character building event
Family: They are much tougher than I am, and when I got shitty while on the steroids, they put up with
some of that, but not all. Liz taught me a lesson in running off at the head. It nearly killed me
when I couldn't control my anger and it spilled off into them. I am learning to be careful
with my feelings, so I don't hurt others
Friends: Next to family the most important thing I've got going with me on this SNAFU run. They
help keep me honest. They are good folk all the way around. I started the blog for family
and friends. So that if one of them gets to ride this rocket, they are doing it blind. And
to maybe give some insight into what it's doing to one person, not just MD Anderson
or any other cancer centers idea of what's going on with one person, and hopefully
if they are in this position, they won't be so afraid.
Breathing: Yeah, I'm thankful I can still draw a breath. There are some days I feel like I'm ready for it
all to end, later on, I'm glad I was too stubborn to quit
The list can go on and on just like these few I've done here seem to wax and wane like tides. It's been a real party so far. It's a damn shame it's going to end sooner than I want it to end. Another thirty or forty years seems like a number I'd rather have.
Have fun today. Hug the family extra tight, Talk with as many friends as you can, eat a ton of food, then sack out on the couch watching football. But mostly, take time to be thankful for all the little things we sometimes overlook
For those of you traveling this morning, Fair Winds and Following Seas
Wednesday, November 27, 2013
Holy!! Dammit!! ARRRRRGGG!! Just, Oh Dammit
While I slept 8 hours yesterday, only two of them were at night, and those two came between 2000 and 2200 hours. I mean, really. I'm kinda trying to get shit straightened back out after the horrible fucking steroid test. Which I knew the outcome and did it anyway kind of stupidity. There isn't much sadder than knowing how something is going to go, and being there when it does go, and not being able to do a damn thing about it because it feels right. And yes, the steroids jacked with me enough being angry seemed like the right thing. That goes into my "Wow, That's Fucked Up" file. So to go along with the let down that comes with being jacked up 24/7 on steroids, my sleep pattern is messed up worse than polio…..again.
I have no place to go, so it shouldn't bother me that my sleep pattern is messed up, but it does. I'm groggy right now and still have a therapy to go to this morning. I can get some rest there. It's no good, since my non working will still leave me awake all night, sleep all day
Chemo brain may have me, but I don't recall if I mentioned I had a cup of joe with an old buddy from LK that lives in New Mexico now. We shot the breeze about all kinds of goofy shit we did when we were in HS. Little stuff like smuggling beer into the brand new theater in Liberal KS. So, Clay H, myself, and Tom R. took a twelve pack of Coors into the theater under our winter coats. That's not the problem. I can't even remember the name of the movie, but that's not the problem either. The problem was what to do with the can's. We decided to set them under our seats and be some of the last ones out. Clay bumped one. It fell. It began to roll. You could hear it over the dialogue and back music. All the long way down, from nearly dead center in the back row, all the way down until it hit the wall under the screen. rowrrowrowr, bonk, rrrrowrrrowr, well, you get the idea. At the time, I was damn near certain that we were gonna get caught and tossed in the jail overnight. Minor in possession, maybe public intoxication. All the worst shit you could think of was running through my head. Until you hear people start to giggle. And the occasional "oops" when it hit a seat leg or something.
Clay H reminded me that I convinced them to make fun of the movie out loud while we watched. Ahead of Mystery Science Theater we were, by God. That was a hoot. People laughed as well. Fun times in the LK. Who'd have thought that in just 4 or 5 short years from then that LK would be racing to grab the top spot as "Murders Per Capita" city. Man, for a while there it was rough. Clay H was home from college, asked me if I wanted to grab a beer on ladies night at Yosemite Sam's. Of course I did, sheesh. I'm not sure exactly what happened later on, but Clay H got hammered and some how pissed off some of the LK's biggest hard asses. Some drug selling brothers. I did manage to get between him and the brothers and start for the door, sideways kind of, and definitely no BBQ. We managed to get away with out a scratch. All I remember is "asshole', "spilled", and "my coke". Rough crowd there some nights, and spilling their nose candy would just about get you shot. I did watch every damn thing for the next few weeks. Just because you get a little paranoid doesn't mean someone isn't watching you. Yep, we had a good time. Now it will be back to normal, when the baby comes home. So no, it's never "normal" again after a baby comes along.
I'm so swollen from God knows what, that it's giving me an ear ache. I don't believe it's in fashion, since they only make 8 per year. So, no. For what that arm candy costs, I could get one Clinical Study session (which I wouldn't do anyway) or pay some more off on baby red. Either way would be acceptable use of my life insurance. HA!! Like I have a say? Nope, I had it basically read "Liz Gets It All). And yes, I believe the kids get a tiny chunk as well. That's up to Liz, she's the one that has to keep up with the house and all. I'm so swollen in my neck and throat that it's difficult to get all the range of motion I had two weeks ago. Thank goodness for therapy. Maybe my PT will have an idea how to help hold the swelling down. Cross my fingers, dot my "i".
Yes, it's frustrating after being on the steroid "why is it wrong to just break one arm?" wagon. It's frustrating to have lost nearly all my ability to talk even a little. That's just like taking the icing off the the cake. Doesn't sound as good, does it. Honestly, it's pretty good. It's really good crumbled up in about a half glass of milk. So yeah, I'm frustrated still. But this time I'm not going to take it out on Liz or anyone else. This time I've got control over myself. Just a little bit, not much, but every little bit counts.
While this is pretty difficult for me to go through when I doesn't bother me as much as it does Liz and the family. It's way easier to fade out, than it is to watch a loved one fade out. At least that's my perception. Someone correct me if I'm wrong
Book Of Rock: Get your ass moving or you'll be late! (literally for me, because I'm running late now)
Be good, get laid
I have no place to go, so it shouldn't bother me that my sleep pattern is messed up, but it does. I'm groggy right now and still have a therapy to go to this morning. I can get some rest there. It's no good, since my non working will still leave me awake all night, sleep all day
Chemo brain may have me, but I don't recall if I mentioned I had a cup of joe with an old buddy from LK that lives in New Mexico now. We shot the breeze about all kinds of goofy shit we did when we were in HS. Little stuff like smuggling beer into the brand new theater in Liberal KS. So, Clay H, myself, and Tom R. took a twelve pack of Coors into the theater under our winter coats. That's not the problem. I can't even remember the name of the movie, but that's not the problem either. The problem was what to do with the can's. We decided to set them under our seats and be some of the last ones out. Clay bumped one. It fell. It began to roll. You could hear it over the dialogue and back music. All the long way down, from nearly dead center in the back row, all the way down until it hit the wall under the screen. rowrrowrowr, bonk, rrrrowrrrowr, well, you get the idea. At the time, I was damn near certain that we were gonna get caught and tossed in the jail overnight. Minor in possession, maybe public intoxication. All the worst shit you could think of was running through my head. Until you hear people start to giggle. And the occasional "oops" when it hit a seat leg or something.
Clay H reminded me that I convinced them to make fun of the movie out loud while we watched. Ahead of Mystery Science Theater we were, by God. That was a hoot. People laughed as well. Fun times in the LK. Who'd have thought that in just 4 or 5 short years from then that LK would be racing to grab the top spot as "Murders Per Capita" city. Man, for a while there it was rough. Clay H was home from college, asked me if I wanted to grab a beer on ladies night at Yosemite Sam's. Of course I did, sheesh. I'm not sure exactly what happened later on, but Clay H got hammered and some how pissed off some of the LK's biggest hard asses. Some drug selling brothers. I did manage to get between him and the brothers and start for the door, sideways kind of, and definitely no BBQ. We managed to get away with out a scratch. All I remember is "asshole', "spilled", and "my coke". Rough crowd there some nights, and spilling their nose candy would just about get you shot. I did watch every damn thing for the next few weeks. Just because you get a little paranoid doesn't mean someone isn't watching you. Yep, we had a good time. Now it will be back to normal, when the baby comes home. So no, it's never "normal" again after a baby comes along.
I'm so swollen from God knows what, that it's giving me an ear ache. I don't believe it's in fashion, since they only make 8 per year. So, no. For what that arm candy costs, I could get one Clinical Study session (which I wouldn't do anyway) or pay some more off on baby red. Either way would be acceptable use of my life insurance. HA!! Like I have a say? Nope, I had it basically read "Liz Gets It All). And yes, I believe the kids get a tiny chunk as well. That's up to Liz, she's the one that has to keep up with the house and all. I'm so swollen in my neck and throat that it's difficult to get all the range of motion I had two weeks ago. Thank goodness for therapy. Maybe my PT will have an idea how to help hold the swelling down. Cross my fingers, dot my "i".
Yes, it's frustrating after being on the steroid "why is it wrong to just break one arm?" wagon. It's frustrating to have lost nearly all my ability to talk even a little. That's just like taking the icing off the the cake. Doesn't sound as good, does it. Honestly, it's pretty good. It's really good crumbled up in about a half glass of milk. So yeah, I'm frustrated still. But this time I'm not going to take it out on Liz or anyone else. This time I've got control over myself. Just a little bit, not much, but every little bit counts.
While this is pretty difficult for me to go through when I doesn't bother me as much as it does Liz and the family. It's way easier to fade out, than it is to watch a loved one fade out. At least that's my perception. Someone correct me if I'm wrong
Book Of Rock: Get your ass moving or you'll be late! (literally for me, because I'm running late now)
Be good, get laid
Tuesday, November 26, 2013
My Work Here Is Done. "Thank You Masked Man"
Well, since I finally got all the steroids washed out of my system, and since I am working on being less of a little bitch, I feel much better and way more relaxed. The hardest thing will be not being angry over how the general public behaves. That's the real rough thing for me to correct, and one of the things that really bugs my wife about me. I'm not much for letting people slide on being assholes, and in turn I'm sure that's how I come off. I gotta learn to just ignore the pricks and let bygones be bygones. It'll probably make me feel better as well, I just have to work on that.
Liz said she wanted to learn how to fix some of the stuff around the house. She got the chance. The way they laid out the plumbing for the drains in the house is ridiculous. Not one central line with everything on a 45degree angle to get into the line, but two separate lines dividing the drains in the house by south and north. One half has the kitchen, wet bar, and laundry on one side, the other is both bathrooms. The side with the most trouble is the kitchen side. About once a year, sometimes less sometimes more, that line gets a partial plug. It's done that since we bought the place. Anyway, I go rent us an electric snake with around 80' of line. I have to wait until she gets home in the first place to help unload the darn thing, because with all my surgery, I can't lift Jack Shit any more. Also because she's going to run it instead of myself
So, out the darn thing comes, and into the side yard we go. It's dripping melted ice off the roof, and besides being really damn cold, it's almost like it's raining. We get all set up and I run over some rudimentary safety stuff. Like "don't grab that, and "If this happens, run", kind of stuff. She gets the plug out of the wall access and starts in. I'm running the foot pedal to spin or stop spinning the cable. It's going okay, but, (this is my fault, I didn't think about what might happen) her jacket sleeve gets caught up in the cable. News for all of you, that little 1/2 HP motor can break a limb like they are twigs if you don't stop. Fortunately, I was about to drop off the drive to begin with. We got that fixed and her jacket sleeves tucked into the cuffs of her gloves. There's something about running one of the rota-rooter type snakes. It's feel. Liz said she felt like it was stopped. Cool, that's the end of the line then.
Pulled out the snake and I started water in the kitchen sink. Nope, still plugged. So, it's my turn, not because Liz can't do it, but because I want to see what I missed as we went in the first time. It ran in like a champ. There were two marker flags on the the line, both of them were in, plus about 10' after the second went past. I see now, what we missed. I can feel a solid spot, but it has some give to it. I believe it's what Liz felt, and it's also my mistake that we have to run it twice. A little back and forth with the blade rotating and it slipped through. It went about another 6-8' then really stopped. I'd hit the Ell going into the main line. Liz did everything I told her to do, so the last two things are my fault for not giving her enough info to run the machine like she could have. At any rate (4.75% is a rate), she got the drain line cleaned and ready to rock and roll.
She's concerned about not being able to fix a lot of the stuff around the house. She'll be better at it, because she is patient. I am not, and with some stuff around the house, I get to the point that no one wants to be around me to help. A shame on my part, I should have been showing Liz and Dec how to fix all the simple things around the house that I tinkered with over the years. Not that I'm looking to live long enough for all of them to pop up, I just need to settle in and write down what has somewhat of a schedule, and explain how to fix it so they have a little reference guide to go through. I'm not stupid, and I know there are so many things that can go wrong I can't cover them all, but they deserve a shot at finding and getting them fixed correctly. I'm betting Liz is sore today, especially in the shoulders and upper body.
Yesterday, early in the AM since I'd slept so long the day before, I showered and was getting ready to start my day. Shower, fix the trach with gauze to keep the outside from getting in there. Well, in the course of the shower my sinuses drain. I can feel them backing up in the back of my throat where I can't suction them very well, but they will eventually cover my epiglottis, which means I can't take in air normally. I've got the trach, but I believe I'm breathing about 50/50 normal/trach tube. If I bend over, it really makes it worse. I'll damn near throw up. I tell people this, just so they know in case something happens.
Something did. I put the tube in and cinch up the collar, slip in the inner canula, and can't draw a breath. Zero, zip, nada. Okay, big inhale through my mouth (i exhale right before I put the tube in every time to relax), nothing. I gurgled a little, then nothing. Okay, so the trach should be okay now, right? Wrong, nothing there, either. Wow, I got just a little bit of a breath, not much but it helps. I'm closing in on panic. Can't breathe, that's a fight losing problem. Okay, mild panic starts. Had to shut that down, because I try and practice what I preach and I preach "Panic Kills". Panic is avoided. No breathing from anything. Just as the edges start to get black, and I have to sit or fall, I undo the trach collar and yank out the tube. HUGE breath!! Oh man does that feel good!! I get rid of the "almost passed out" black edges. I try and suction again, still no good. Finally, the mucus causes me to gag and try to vomit. I do not vomit, but I do get rid of the huge plug. I check my trach tube and find a solid blood clot blocking it, about half way up into the tube. That explains why I had a hard time taking out the inner canula, it was wedged in. Spooky stuff. All that cleared up and I'm able to start the day. I wish I'd had time to get one of the kids awake, but it was way too early for that. That was a pretty close call. Nearly passing out. I'm not sure that I'd awoken again. If I'd passed out and relaxed, would the plug in my throat cleared itself? I don't know. I do know, however, that if I'm beginning to struggle with my airways like that again, I'm waking a kid up, if I have to light a bomb to get them up. Back in the day I'd had two episodes of hypoglycemia causing me to pass out on both of them. One at home, one on the rig. On the rig was bad, home wasn't so. I sat on the couch, passed out and woke up about 10 minutes later totally refreshed. I fear that would not be the case with this problem.
All in all, what with the steroids helping me make really stupid decisions and being angry at the people that matter most, nearly passing out with real possible chances of not recovering, and some of the other stuff that happens on my way outta here, this week has probably been the worst of the lot. Finding out I was terminal isn't as bad as the way I treated the family and Liz while I was on the damn steroids. Something I knew better than to take in the first place. You know, because I'm a dick for taking them anyway. How bright is a person that tells the nurse, who tells the PA, who tells the Dr (who hasn't even seen me) how steroids affect them, then goes ahead and takes them anyway. All the bad side effects with none of the positive that's supposed to happen. It's like hitting your forehead with a hammer. How long to you keep that up if it hurts the first time?
The chilly/damp weather is playing hell with my legs and joints. I've got a touch of arthritis in both hands and both knees. I suppose after breaking eight of my ten fingers makes me a bit arthritic there, and I've twisted both knees, plus being on my feet 12-14 hours a day for fourteen years didn't help my knees any. I know I'm not as bad off as some of my football friends. When I do finally slip these mortal coils, I'm hoping I don't have that stuff on the next level. And that once there, I can round up a few folks I know, so we can work some shenanigans. Tom Ruch had better be ready.
Book Of Rock: For God's sake if you know something is going to affect you adversely, don't fucking take it. It's your life, not some Doc with God envy, who knows what it your body will stand.
Today, since we are so close to Thanksgiving, take time to look around at the things that you have. They all have a place, but for giggles take a look at how many you really need or can just be kicked to the curb. You'll be surprised what you don't really need after all.
Just a little something to look at and ponder upon. I know, for myself, that I don't need a whole lot. I have a lot of toys, they are for pleasure, not necessity. But having them makes me happy to an extent, so I'm keeping them all. It's nice to be to the point in my life that I can have those, and still have the open space that I so truly enjoy
They talk about living on "The Rugged Llano Estacado". I have news for ya, folks who reside in the Basin. Living here isn't any more tough than up north in the Big Open. A short 240 miles north at Amarillo it's much tougher to live than here. It's not only colder, but it's every bit as hot in the summer. We folk that grew up in The Big Open are a hearty breed. I think that's why I fight this so well. From growing up in the High Plains of Kansas to the Big Open around Liberal Ks and the panhandles, it's a tough row.
If you're breathing, be thankful. If not, may you speed to your next location, and find it in need of a top hand
Liz said she wanted to learn how to fix some of the stuff around the house. She got the chance. The way they laid out the plumbing for the drains in the house is ridiculous. Not one central line with everything on a 45degree angle to get into the line, but two separate lines dividing the drains in the house by south and north. One half has the kitchen, wet bar, and laundry on one side, the other is both bathrooms. The side with the most trouble is the kitchen side. About once a year, sometimes less sometimes more, that line gets a partial plug. It's done that since we bought the place. Anyway, I go rent us an electric snake with around 80' of line. I have to wait until she gets home in the first place to help unload the darn thing, because with all my surgery, I can't lift Jack Shit any more. Also because she's going to run it instead of myself
So, out the darn thing comes, and into the side yard we go. It's dripping melted ice off the roof, and besides being really damn cold, it's almost like it's raining. We get all set up and I run over some rudimentary safety stuff. Like "don't grab that, and "If this happens, run", kind of stuff. She gets the plug out of the wall access and starts in. I'm running the foot pedal to spin or stop spinning the cable. It's going okay, but, (this is my fault, I didn't think about what might happen) her jacket sleeve gets caught up in the cable. News for all of you, that little 1/2 HP motor can break a limb like they are twigs if you don't stop. Fortunately, I was about to drop off the drive to begin with. We got that fixed and her jacket sleeves tucked into the cuffs of her gloves. There's something about running one of the rota-rooter type snakes. It's feel. Liz said she felt like it was stopped. Cool, that's the end of the line then.
Pulled out the snake and I started water in the kitchen sink. Nope, still plugged. So, it's my turn, not because Liz can't do it, but because I want to see what I missed as we went in the first time. It ran in like a champ. There were two marker flags on the the line, both of them were in, plus about 10' after the second went past. I see now, what we missed. I can feel a solid spot, but it has some give to it. I believe it's what Liz felt, and it's also my mistake that we have to run it twice. A little back and forth with the blade rotating and it slipped through. It went about another 6-8' then really stopped. I'd hit the Ell going into the main line. Liz did everything I told her to do, so the last two things are my fault for not giving her enough info to run the machine like she could have. At any rate (4.75% is a rate), she got the drain line cleaned and ready to rock and roll.
She's concerned about not being able to fix a lot of the stuff around the house. She'll be better at it, because she is patient. I am not, and with some stuff around the house, I get to the point that no one wants to be around me to help. A shame on my part, I should have been showing Liz and Dec how to fix all the simple things around the house that I tinkered with over the years. Not that I'm looking to live long enough for all of them to pop up, I just need to settle in and write down what has somewhat of a schedule, and explain how to fix it so they have a little reference guide to go through. I'm not stupid, and I know there are so many things that can go wrong I can't cover them all, but they deserve a shot at finding and getting them fixed correctly. I'm betting Liz is sore today, especially in the shoulders and upper body.
Yesterday, early in the AM since I'd slept so long the day before, I showered and was getting ready to start my day. Shower, fix the trach with gauze to keep the outside from getting in there. Well, in the course of the shower my sinuses drain. I can feel them backing up in the back of my throat where I can't suction them very well, but they will eventually cover my epiglottis, which means I can't take in air normally. I've got the trach, but I believe I'm breathing about 50/50 normal/trach tube. If I bend over, it really makes it worse. I'll damn near throw up. I tell people this, just so they know in case something happens.
Something did. I put the tube in and cinch up the collar, slip in the inner canula, and can't draw a breath. Zero, zip, nada. Okay, big inhale through my mouth (i exhale right before I put the tube in every time to relax), nothing. I gurgled a little, then nothing. Okay, so the trach should be okay now, right? Wrong, nothing there, either. Wow, I got just a little bit of a breath, not much but it helps. I'm closing in on panic. Can't breathe, that's a fight losing problem. Okay, mild panic starts. Had to shut that down, because I try and practice what I preach and I preach "Panic Kills". Panic is avoided. No breathing from anything. Just as the edges start to get black, and I have to sit or fall, I undo the trach collar and yank out the tube. HUGE breath!! Oh man does that feel good!! I get rid of the "almost passed out" black edges. I try and suction again, still no good. Finally, the mucus causes me to gag and try to vomit. I do not vomit, but I do get rid of the huge plug. I check my trach tube and find a solid blood clot blocking it, about half way up into the tube. That explains why I had a hard time taking out the inner canula, it was wedged in. Spooky stuff. All that cleared up and I'm able to start the day. I wish I'd had time to get one of the kids awake, but it was way too early for that. That was a pretty close call. Nearly passing out. I'm not sure that I'd awoken again. If I'd passed out and relaxed, would the plug in my throat cleared itself? I don't know. I do know, however, that if I'm beginning to struggle with my airways like that again, I'm waking a kid up, if I have to light a bomb to get them up. Back in the day I'd had two episodes of hypoglycemia causing me to pass out on both of them. One at home, one on the rig. On the rig was bad, home wasn't so. I sat on the couch, passed out and woke up about 10 minutes later totally refreshed. I fear that would not be the case with this problem.
All in all, what with the steroids helping me make really stupid decisions and being angry at the people that matter most, nearly passing out with real possible chances of not recovering, and some of the other stuff that happens on my way outta here, this week has probably been the worst of the lot. Finding out I was terminal isn't as bad as the way I treated the family and Liz while I was on the damn steroids. Something I knew better than to take in the first place. You know, because I'm a dick for taking them anyway. How bright is a person that tells the nurse, who tells the PA, who tells the Dr (who hasn't even seen me) how steroids affect them, then goes ahead and takes them anyway. All the bad side effects with none of the positive that's supposed to happen. It's like hitting your forehead with a hammer. How long to you keep that up if it hurts the first time?
The chilly/damp weather is playing hell with my legs and joints. I've got a touch of arthritis in both hands and both knees. I suppose after breaking eight of my ten fingers makes me a bit arthritic there, and I've twisted both knees, plus being on my feet 12-14 hours a day for fourteen years didn't help my knees any. I know I'm not as bad off as some of my football friends. When I do finally slip these mortal coils, I'm hoping I don't have that stuff on the next level. And that once there, I can round up a few folks I know, so we can work some shenanigans. Tom Ruch had better be ready.
Book Of Rock: For God's sake if you know something is going to affect you adversely, don't fucking take it. It's your life, not some Doc with God envy, who knows what it your body will stand.
Today, since we are so close to Thanksgiving, take time to look around at the things that you have. They all have a place, but for giggles take a look at how many you really need or can just be kicked to the curb. You'll be surprised what you don't really need after all.
Just a little something to look at and ponder upon. I know, for myself, that I don't need a whole lot. I have a lot of toys, they are for pleasure, not necessity. But having them makes me happy to an extent, so I'm keeping them all. It's nice to be to the point in my life that I can have those, and still have the open space that I so truly enjoy
They talk about living on "The Rugged Llano Estacado". I have news for ya, folks who reside in the Basin. Living here isn't any more tough than up north in the Big Open. A short 240 miles north at Amarillo it's much tougher to live than here. It's not only colder, but it's every bit as hot in the summer. We folk that grew up in The Big Open are a hearty breed. I think that's why I fight this so well. From growing up in the High Plains of Kansas to the Big Open around Liberal Ks and the panhandles, it's a tough row.
If you're breathing, be thankful. If not, may you speed to your next location, and find it in need of a top hand
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